WHEN I was young my sister would often take me to the Gibson Park netball courts in fancy dress to roller skate and run amok, or for other fun adventures.
She was my vivacious, energetic and slightly wild big sister who I admired greatly.
Today, she often struggles to leave the house.
She doesn’t make plans or commit to events because she never knows when she will be struck down by her debilitating illness.
My sister has lived with the largely unknown and misunderstood condition Myalgic Encephalomyelitis for almost a decade, since she got sick in Geraldton and never really recovered.
ME/chronic fatigue syndrome and post-viral fatigue syndrome are genuine and disabling illnesses.
The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.
Many healthcare providers are sceptical about the seriousness of ME/CFS, often mistaking it for a mental health condition or consider it a figment of the patient’s imagination.
Misconceptions or dismissive attitudes from the medical profession make diagnosis and treatment a very long and frustrating process for many patients like my sister.
There is a substantial deficit in what is known about this disease, what causes it, and how best to help people who live with it.
In some cases patients can become home or bed-bound for many months or years on end.
Campaigners are working across the globe on the #MillionsMissing campaign that aims to raise awareness and understanding of ME/CFS and have it recognised as a serious illness that requires timely diagnosis and appropriate care and further research.
In WA we have the ME/CFS and Lyme Association of WA fighting our corner.
A global day of action will be held on Saturday May 12, when buildings worldwide will be illuminated blue to acknowledge ME/CFS. The City of Fremantle is proud to participate in this global day of action by illuminating Victoria Hall, the Moores Building and the Roundhouse cliffs.
We do this in recognition of those people in our community who, like my sister, are among the “Millions Missing”—missing from daily life due to their struggle with ME/CFS and related illnesses.
These Fremantle icons will be illuminated blue as a signal that we have not forgotten you and we want to help you.
Hundreds of shoes will be displayed at a community event at Pioneer Park at noon on Saturday May 12 to represent the people across Perth who are among the “Millions Missing” due to ME/CFS.
For more information visit http://www.may12th.org.au
• Rachel Pemberton is a Fremantle councillor.
by RACHEL PEMBERTON